The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.
I remember thinking when this year began that things were finally coming together for the Scheinert girls, who have had no shortage of ups and downs. My mom, two sisters, and I have been through it all together. I was diagnosed with Juvenile Rheumatoid Arthritis before I could walk, and a variety of other autoimmune …
Although a majority of patients with anti-NMDA receptor encephalitis make a good recovery, it can take time for patients to recover. Physicians are often looking for objective means to assess a patient’s recovery and ways to monitor for relapses. Researchers at Northwestern and Massachusetts General recently published a case study in which they used a …
Researchers recently released a study in the journal Brain, in which they revealed interesting discoveries about the subtypes of AE associated with LGI1 and CASPR2 antibodies. There is clinical overlap between these two syndromes and, although rare, some patients present with both types of antibodies. These types of AE often present in males, typically in …
In the Summer of 2017, I was a 46-year old mom of two young children, working part time as an attorney, just returning from a weekend away with my girlfriends. I was having difficulty sleeping, but often had insomnia this time of year. My thoughts were becoming jumbled and weren’t making sense. Little did I …
Physicians from centers in four countries collaborated on a recent retrospective study concerning the use of mycophenolate mofetil (Cell Cept) in autoimmune/immune-mediated diseases of the central nervous system in children. A large percentage of the study population were children with autoimmune encephalitis. The authors were interested in the safety of the medication and whether children …
The AE Alliance is excited to announce a groundbreaking symposium titled: “Autoimmune Encephalitis: A Bridge Between Neurology and Psychiatry.” HESA (Hashimoto’s Encephalopathy SREAT Alliance) is the initiator and lead organizer of this symposium to be held on April 6, 2019 at Weill Cornell Medical School, Cornell University in New York, NY. The April 2019 symposium for doctors …
I remember so well the day I came back into consciousness in July 2017 in Washington. I was lying in a hospital bed, President Trump making a speech on TV, and ‘Get Well’ balloons on my left. First thought was, why am I here? And second was, isn’t Obama the U.S President? Shortly after, my …
New methods of studying the brain have been emerging in recent decades. One such method is the use of functional MRI, which is a way to measure how the brain works as opposed to regular MRI, which looks at structure. This week an exciting new research study was released by the Autoimmune Neurology Group in …
We have just partnered with Smart Patients, to create an online support community for patients and caregivers affected by AE. We receive so many questions on diagnosis, treatment and recovery, we thought we could help more people by bringing them together in a safe online community. Here you can ask questions, share experiences, gain insight …
Due to the nature of early symptoms in AE, studies have shown that patients often present first to psychiatrists or mental health facilities. Screening for the potential of autoimmune encephalitis may or may not be done, depending on awareness of the treating physicians and availability of testing. Drs. Pollack and Lennox of the UK have …
